Adelaine now gets many compliments on her sheek Pixie cut!


Adelaine went to the clinic on Thursday to have her blood levels checked, and her ANC is still at 500. Although her levels are not great, they have decided to continue her chemo. They also discovered that one of the ear tubes we just had put in is apparently falling out. We have a follow up visit scheduled with the ENT next week.

Anyway, as you know for much of the first 8 months Adelaine was feeling so poorly that most of the time all she did was lie in her bed and watch TV. About 2 months ago we started giving her this juice called MonaVie, and she has felt much better since then, her energy levels seem that of a normal, healthy child! We are so amazed! I am planning to share our MonaVie story soon, but first I would like to share some startling news, you should probably sit down for this…

Doug and I began doing research on childhood cancer and cancer in general and we are now much more aware and informed on just how big and powerful cancer is, especially cancer among children. Here are some sobering facts…

Today, according to the American Medical Association, the chances of developing cancer are 1 in 3. By the year 2010, those odds will increase to 1 in 2 people. Right now every person, adult and child alike, has a 30% chance of developing some form of cancer. In just three years we all will have a 50 /50 chance of getting cancer. This is very frightening, Hugh! For us it’s much worse…

The particular ALL Leukemia, which Adelaine was been diagnosed with, has a 98% cure rate. This cure rate sounds pretty peachy doesn’t it? Well, unfortunately this is not the end of the story, this number has been greatly candy coated. My heart sinks as I share this news, which we only found out a few days ago. The definition of this cure rate simply means that after treatment she has a 98% chance of not getting this same cancer over the next ten years. That only gets her to the age of 14, then what? Also, because of the chemotherapy treatments that she has received and will receive over the next 1 ½ years, she is about 20 times more likely to get a secondary cancer than someone that has never had cancer before. This leaves her with an 87% chance of developing a secondary cancer because of the treatments for this cancer. Chemo is not a cure for cancer but it does kill cancer cells, however, it also affects the good cells in the body. Chemo is also a known cancer-causing agent. Watching our child suffer has been more painful than we could ever put into words. I can not bear to think that after she beats this cancer, she has an 87% chance (based on the last 30 years of research) of having to go through all this again. Chances are slim to none that our family and yours have seen the end of this horrendous beast. We’re not going down with out a fight and we hope each of you will join us.

With Anissa’s permission I have copied this from Peyton’s website regarding a conversation that we had a few days ago…

Angela Powell and I had a long talk today about the reality of cancer. She was frustrated with the fact that the risk for secondary cancers is so high in pediatric leukemia patients. We talked about how the phrase “80% cure rate” is a lie. Cancer stinks and there is absolutely no way to pretty up. The phrase that I read all the time is that ALL leukemia is “the most common and most curable form of pediatric cancer”. That just means that the cure rates for other cancers reallllllllly stinks! She said “What’s the use of going through all this treatment if they’re just going to get cancer again anyway!” Oh do I understand her frustration and fear.

That 80% cure rate sounded so good following the words “Your child has cancer”. I held on to that with all my heart. 80% is good! 80% is doable! 80% is higher than most of the grades I got in math class throughout my school years and I still managed to graduate! We’ll take 80%!! Then I read and I get more information and I realized that 80% applies to kids who are between the ages of 2-10, who don’t get leukemia in their spinal fluid, who don’t have all the crazy qualifying genetic factors…and 80% is only good for a 10 year survival rate. That’s 80% who live 10 years past their diagnosis.

We’re finding out that because Peyton is a higher risk, she falls short of that 80%. Because of her spinal fluid being positive for leukemia at the time of diagnosis, she’s higher for the chance of relapse and secondary cancer. Because she has to have radiation on her brain and spine, she’s adding to that chance of secondary cancer and tumors.

When we were told there was an 80% cure rate for her type of cancer, I was joyous because I thought “Hey, we’ll cure it and then life can go back to normal”. I’m finding out that this is our normal. Life will never go back to what it was. She will never be the child she would have been without cancer. Her body will never be what it could have been. She may suffer growth issues, her pain could be temporary side effects of her medication, but it could also be permanent damage, she will always be at risk for cancers and have to be followed carefully throughout the rest of her life. Her mind won’t be what it could have been. She’ll probably loose a few IQ points, she may struggle at school with memory and cognitive issues, and she may have to work harder to do what other kids her age are doing naturally for the rest of her life.

Oh how we wish this wasn’t our story to share, but it is. It’s been 10 months now and I still can’t believe this has happened, even though we live it every single day. What can we do now, where do we go from here? We hope to share our story with other people so that this doesn’t become their story also. Doug and I are currently undergoing hours of research on how to PREVENT this. They may not know what causes cancer, but they do know exactly what it is and how it all starts. We are putting all our research together and plan to meet with some more doctors and professionals this week about it.

We have never shared what it is like to have chemotherapy drugs in our home. But by not sharing people won’t know the whole story, right?!! Some doctors and nurses are more relaxed than others about handling these potential cancer-causing agents. Some of this information, the doctors did go over with us, and some are from a pamphlet produced by the American Cancer Society that we discovered at All Children’s Hospital not long ago. I hope people reading this do not get the wrong idea. Cancer is most definitely NOT contagious. Being around a person with cancer poses no known risks, but when people are living together with someone undergoing chemotherapy, there are some necessary recommended precautions. They are….

Always wear gloves when handling chemo, (some doctors even recommend wearing a mask when cutting or crushing chemo that is in pill form). Keep all utensils, vials, medicine dispensers, ect. used to administer chemo, separate (do not cross contaminate). Always flush the toilet twice after a chemo patient has used it, and clean the toilet after every use. Wear gloves when changing diapers, and then double bag the diapers, taking care to tightly seal the bag. Always wear gloves when handling urine or waste. If bedding or clothing becomes soiled with urine, double wash these articles in hot water. Because most chemo stays in the system for about 48 hours, do not allow a patient to share a bed, as some chemo may be released through the pores as they sleep. Do not allow a chemo patient to take tub baths with others. (For Bowen’s birthday, he said he wanted to take a tub bath with Mason and Adelaine and play with all the tub toys like they used to. I scrubbed the tub and toys really well and Bowen got his wish). We were also told not to share food or drinks with Adelaine because of the germ issue, however, I’m sure we could get chemo exposure this way too.

Now let’s be practical. Do you really think we double flush the toilet every time she uses it? We honestly don’t wear gloves when we handle her chemo either, but we do always wash our hands immediately afterwards. We have to be practical plus, we love Adelaine and would never want to treat her like she has the plague, but we do have to be careful, if not for us then for Mason and Bowen’s sake. I do sometimes wonder just how much exposure we have to these cancer causing agents since they are in our home and are handled on a daily basis. Could it make our odds of getting cancer go up a little? Who knows! Let me just say this again. I HATE CANCER!

One of the posts we did a few months ago, we talked about how on September 5th 2008, we would spread our wings and fly far away from here. Now we feel that we will be flying straight into a mountain or something. What we desperately need now is continued healing and preventative prayer, and lots of it. Please pray for Peyton and her family too. Every day our precious Adelaine prays to God about cancer. Her prayer goes like this… “Dear God please help my, Mommy to feel better, my Daddy to feel better, my Mason to feel better, my Bowen to feel better (I guess she thinks we all feel sick too, and I guess we kind of do)! Please help them to never ever get cancer, and please help me to never ever have cancer again.” She prays this prayer every single day of her life. Oh how we wish she was still innocent and unknowing and uncaring about such things.

How did we not know all this much sooner? Doug claims that they probably told us when she was diagnosed. This could be, I mean really, after you’ve been told that your child has cancer, you really don’t hear anything else! Since we’ve found out the “real” statistics, it’s been difficult to sleep. Last night I dreamed that we were in a car and spotted a tornado. It chased us down. We tried to outrun it, but it eventually caught up with us. It lifted us and everything around clear off the ground, but amazingly, it placed us softly back down, as if nothing had happened! Now matter what we know that in the end God is with us and Adelaine will be healed. Thank you for your prayers.

To end on a good note, Mason turned seven on Friday, and we celebrated his birthday all weekend. While we were discovering that our lives will NEVER be the same, and that things weren’t what they seemed, we made ourselves shift gears to celebrate life, a precious birthday with our son. The whole family showed up at Mason’s school to surprise him, and we all had lunch together. Then on Friday night we went to the Crescent Lake Relay for Life in St. Petersburg. My friend Becky was working this one. The DJ announced Mason’s birthday and we all partied until well after dark. We had so much fun. As we did the walk at dark, a photo was taken of Doug holding Adelaine with her head on his shoulder, which was entered it into a contest, maybe we’ll win! Around 10:00 PM, we came home and put the children to bed, then I went back and camped out all night with Becky. We enjoyed our time together. I really want to reconnect with my girl friends, many seem to have drifted from all this. Saturday the guys went to the movie, “Meet the Robinson’s”, while Adelaine and I stayed home to rest. Doug said it was awesome (he wants to take the entire family to see it in 3-D). Today we went to the see the Tampa Bay Storms play Arena football with the Mayhew’s. The “six pack” had a blast as always. We scored box seats from the Children’s Cancer Center, and it was fantastic. Thank goodness for the Children’s Cancer Center. There perks really do give us amazing experiences together as a family and we will always have these fond memories

Like this post? Subscribe to my RSS feed and get loads more!